My Rheumatologist’s office called and is requesting that I drop from 4Mg to 1mg methylprednisolone because of perfect labs.
I know!!
I wrote her back that I need to continue with my slow taper plan to avoid prednisone withdrawal and adrenal crisis
I would like to send her an accredited external medical article or report which backs up the need for a slow taper and one she could not argue with due to its origin. I searched this site and Google but could not find one which refers to the dead slow taper or 10% rule as recommended to avoid adrenal crisis after long term use of steroids when below 5mg.
Any suggestions?
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Italybound62
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Well, apart from the fact that all that blood test shows is that 4mg methyl pred is adequate at present ... 3mg might not be and they will just cause a massive flare. Have they NO understanding of the nature of PMR?
This may show them how complex the situation can be from 5mg pred/4mg methyl pred
"0.5 mg/day every two to four weeks at prednisone doses <5 mg/day.
Tapering GCs according to the mentioned regimen does not always prevent symptoms of AI. If patients develop signs or symptoms of AI during or after GC withdrawal, then dynamic testing of adrenal function should be performed."
I think they also assume a switch to hydrocortisone but that isn't really an option with PMR because the antiinflammatory effect is so much poorer.
This is also very detailed and emphasises the need for SLOW tapering UNDER EXPERT GUIDANCE for long term steroid patients like us - and the average rheumy is NOT an expert!
But all mention the impossibilty of predicting any relationship between duration, dose and development of tertiary AI - other than that studies found it in 37-48% of patients. And that AI was found in 15% of patients as long as 3 years after cessation of steroid treatment.
If they make you reduce the dose like that - they are playing with fire and AI can kill if an adrenal crisis develops and is not recognised and managed aggressively in a timely manner. Do they really want that on their conscience?
Thank you Pro and Piglette. I had found both of these also. I wasn’t sure if anything else existed from the medical experts which also validated or recommended the DSNS taper method. I guess as I think about it, this method probably instead comes more from actual PMR patients using their own experience.
DSNS is from us - me actually, based on an approach a Swedish gentleman used from 5mg as he struggled to taper. But the DSNS has been used in a study by Prof Sarah Mackie and approved as a suitable approach, and she is quoted here:
I had to drop from 7mg to 5mg because I had to have surgery. Luckily there was no flare up and I continue tapering with 1mg a month for the next five months. I’m sure my labs were fine but the rheumatologist said to follow the slow tapering protocol. So far so good and it’s been about a year and a half. Play it safe and continue the slow tapering.
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Slow, slow, quick quick slow -to taper or not?
Continue to taper or not?
Return of PMR Symptoms While Doing A Slow Taper
To taper or not to taper. That is the question.
